Guest guest Posted February 3, 1999 Report Share Posted February 3, 1999 ---------- > > To: beannie@... > Subject: RE: Re: Surgery > Date: Wednesday, February 03, 1999 5:24 PM > > (and others who have had surgery): > > Please do NOT think that I am being unsupportive by questioning a theory that I > have heard passed around!! I am just trying to gain some more understanding of > this vicious condition and the possible treatments. I am supportive of every > person on this list and respect you all as intelligent women who make informed > decisions on what treatments to pursue. I really don't think that anyone else > who has voiced their opinion is being unsupportive either, but rather just > sharing their opinions as I requested that they do. We owe it to ourselves and > each other to explore ALL our options and the positives, negatives, and > possibilities involved. > > With that being said, I must admit that Robin pretty much hit it right on the > head when she brought up her cut finger being numb theory. That is exactly what > brought this to mind - and then when Becky posted about having no pain with > dilation of her vagina but experiencing bleeding - it made me wonder. I > recently cut my finger badly and deeply and it is still numb. This was done > over a week ago, so I can only imagine what it would be like to have major > surgery and the trauma that the nerve endings would experience. > > Regarding 's comment about it not being a nerve ending issue - with all due > respect, doesn't every kind of invasion/surgery/cutting/wounding process affect > the nerve endings? > > Again - please don't interpret my questions as negative or unsupportive. I'm > just trying to understand. > > Warmly, > Heidi > > ___________________________________________________________________ > Sent via Fetchmail - free email service at http://www.fetchmail.com > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 1999 Report Share Posted February 3, 1999 , all, I didn't mean to sound unsupportive of surgery in my earlier post. I lived with cyclic vulvovaginitis (but was misdiagnosed as vulvar vestibulitis) for six years and as far as I'm concerned ladies, whatever works for you, do it!!! Anything to get out of this vulvodynia nightmare!! Before I saw Dr. I did some research on surgery in case he suggested it at some point. Thankfully, I was a quick fix so I never had to deal with the issue. , I truly wish you continued success with your surgery results. Robin Surgery > > > > > I have a question regarding the surgery issue which I'm not sure anyone > will have an answer to, but I'm going to ask anyway. > > Is it possible that after surgery your nerve endings are not good > indicators of pain because of the trauma they've endured and so will > make it feel like you have no pain now, but as time goes on, you will > end up in pain again? I've heard this theory before and I'm probably > not using the right terminology - but I hope you get the point of the > question. > > What do you think? > Heidi > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 1999 Report Share Posted February 3, 1999 , all, I didn't mean to sound unsupportive of surgery in my earlier post. I lived with cyclic vulvovaginitis (but was misdiagnosed as vulvar vestibulitis) for six years and as far as I'm concerned ladies, whatever works for you, do it!!! Anything to get out of this vulvodynia nightmare!! Before I saw Dr. I did some research on surgery in case he suggested it at some point. Thankfully, I was a quick fix so I never had to deal with the issue. , I truly wish you continued success with your surgery results. Robin Surgery > > > > > I have a question regarding the surgery issue which I'm not sure anyone > will have an answer to, but I'm going to ask anyway. > > Is it possible that after surgery your nerve endings are not good > indicators of pain because of the trauma they've endured and so will > make it feel like you have no pain now, but as time goes on, you will > end up in pain again? I've heard this theory before and I'm probably > not using the right terminology - but I hope you get the point of the > question. > > What do you think? > Heidi > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 1999 Report Share Posted February 3, 1999 Thanks Robin. ---------- > > To: 'VulvarDisordersonelist' > Subject: Re: Surgery > Date: Wednesday, February 03, 1999 5:37 PM > > > > , all, > > I didn't mean to sound unsupportive of surgery in my earlier post. I lived > with cyclic vulvovaginitis (but was misdiagnosed as vulvar vestibulitis) for > six years and as far as I'm concerned ladies, whatever works for you, do > it!!! Anything to get out of this vulvodynia nightmare!! > > Before I saw Dr. I did some research on surgery in case he suggested > it at some point. Thankfully, I was a quick fix so I never had to deal with > the issue. > > , I truly wish you continued success with your surgery results. > > Robin > Surgery > > > > > > > > > > I have a question regarding the surgery issue which I'm not sure anyone > > will have an answer to, but I'm going to ask anyway. > > > > Is it possible that after surgery your nerve endings are not good > > indicators of pain because of the trauma they've endured and so will > > make it feel like you have no pain now, but as time goes on, you will > > end up in pain again? I've heard this theory before and I'm probably > > not using the right terminology - but I hope you get the point of the > > question. > > > > What do you think? > > Heidi > > > > ------------------------------------------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 1999 Report Share Posted February 3, 1999 Thanks Robin. ---------- > > To: 'VulvarDisordersonelist' > Subject: Re: Surgery > Date: Wednesday, February 03, 1999 5:37 PM > > > > , all, > > I didn't mean to sound unsupportive of surgery in my earlier post. I lived > with cyclic vulvovaginitis (but was misdiagnosed as vulvar vestibulitis) for > six years and as far as I'm concerned ladies, whatever works for you, do > it!!! Anything to get out of this vulvodynia nightmare!! > > Before I saw Dr. I did some research on surgery in case he suggested > it at some point. Thankfully, I was a quick fix so I never had to deal with > the issue. > > , I truly wish you continued success with your surgery results. > > Robin > Surgery > > > > > > > > > > I have a question regarding the surgery issue which I'm not sure anyone > > will have an answer to, but I'm going to ask anyway. > > > > Is it possible that after surgery your nerve endings are not good > > indicators of pain because of the trauma they've endured and so will > > make it feel like you have no pain now, but as time goes on, you will > > end up in pain again? I've heard this theory before and I'm probably > > not using the right terminology - but I hope you get the point of the > > question. > > > > What do you think? > > Heidi > > > > ------------------------------------------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 1999 Report Share Posted February 4, 1999 Hi Heidi and All ->Is it possible that after surgery your nerve endings are not good >indicators of pain because of the trauma they've endured and so will >make it feel like you have no pain now, but as time goes on, you will >end up in pain again? I've heard this theory before and I'm probably >not using the right terminology - but I hope you get the point of the >question. I don't know the answer but when I was first diagnosed with vv I was told about surgery. Basically, I was told that it had worked for some women (no long term studies), but for most it hadn't - I was recommended not to have it done. Another consideration is, do the docs really know why they are doing the surgery? This is really interesting, and I would also like to know if anyone has the answer. Kind regards - vvs, POC, burning .@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 1999 Report Share Posted February 4, 1999 Whew! What a roller coaster of a day. This has truly been a hectic day for me personally, at work and on the list. Before I go to bed, I just wanted to post again about this whole surgery debate that I sparked. First of all, I want to apologize again to anyone who may have been offended by my questioning. Certainly that was not my intention. Secondly, I want to say that I strongly encourage intelligent conversation and debate about issues that surround VVS. This is a very emotional issue for all of us, though, so we have to remember two things: 1) be sensitive of all and consider how others may perceive your posts before you send them and 2) don't necessarily assume the worst - remember that we are all here to get and give support. Obviously, there are many different feelings about surgery. All things considered, I want to point out that it is the treatment method that has the highest documented success rate (upwards of 80%). Of course surgery is not for everyone - but it is the right answer for some, and obviously has had very positive results thus far and there is no reason to believe that her positive progress would not continue. I truly believe that whatever treatments you pursue you should be educated as completely as possible about them. Surgery is a complicated issue with more potential risks than most treatments, so there is a lot to consider. Women who have had negative experiences and women who have had positive experiences should share their stories with all of us so that we can all realize the possible outcomes. No matter what, ladies, remember that I truly care deeply about all of you, okay? I hope you all know that. Warmly, Heidi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 1999 Report Share Posted February 4, 1999 Hi , Daina, and all others, I was glad to hear that all of you are doing fine after your surgeries. I have also been contemplating surgery, and I too have been surprised by what I feel is a lack of support for this option. A few months ago when I wrote that I was considering surgery I even got an anonymous " warning " off-list not to go ahead with it. I do realize that most of those who object to this treatment are genuinely concerned about our well-being and just want to remind us of the risks and encourage us to exhaust all other options first. However, this is a very emotional issue and it is so very easy to mistake genuine concern for criticism. I am still considering surgery, but there are still a few other options that I would like to try before that (e.g. capsaicin). I am aware of the risks associated with surgery, but I have also heard many success stories. And , I think you made very good point when you wrote that for all VVS treatments good results seem to be more the exception than the rule. Unfortunately, that seems to be so true… And Heidi, thank you for a wonderful web-site, it looks great and I hope that many women looking for more information will find it. I also think that you expressed yourself so well in your last post yesterday on surgery, I think it summarized the discussion quite well. I am sure that no one doubts your good intentions and by now we all know how deeply you care for all of us. I can assure you that we are very grateful that there is someone like you out there. Warmly, from Finland (POC) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 1999 Report Share Posted February 4, 1999 Robin, This is a. I was just wondering why the doctors misdiagnosed you with vulvar vestibulitis? Did they do a q-tip test? If they did was there a lot of pain like women with vestibulitis have when they did the test on you? Also, how come they didn't diagnose you with cyclic vulvovaginitis due to yeast in the first place? I'm just asking because I'm still not sure if my vulvodynia is caused by chronic yeast or a yeast allergy or if yeast has anything to do with my burning pain which is constant. I also want to ask who how the doctors did diagnose you with the yeast problem? Did they do tests for yeast through your blood? How did they find out that yeast was the cause? I want to find the out the answer to that question too and I was just wondering what tests should my doctor do to find out whether yeast is the cause of my vulvodynia? I would really appreciate your feedback. a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 1999 Report Share Posted February 4, 1999 Beckie said: >I asked him about the nerves and if they regenerate and will start to cause >pain. He said that the nerves do regenerate but they are not the cause of the >pain. The pain in true vestibulitis comes from the vestibular glands >themselves. Therefore, the pain will not come back. > Beckie, I am just wondering, what are the " vestibular glands " exactly? The surgery I had didn't deal with the v. glands I THINK. It was more the surface tissues....actually, I really don't know what the heck I am talking about!!! I am so confused. What are the reasons for different types of surgery for vestibulitis (perinioplasty, vestibular revivsion, vulvoectomy -- sorry about the spelling). Obviously, everyone's vulvar problem is different, but then what is the common thing that holds together the diagnosis of vestibulits -- just pain with a Q-tip!!??? Sorry, I am venting. Lots of steam coming off from confusion. Were your v. glands removed totally? Does your doctor think this is the only reason for vestibulitis? If the pain comes from the glands, what is wrong with them? And why does the tissue hurt so much on the surface? Is the pain just spreading around? sorry to bombard you with questions. Anyone have some ideas? I am so glad you are doing well. It is so impressive. Being out of pain down there must be heaven. Can't wait!!!!! Carolyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 1999 Report Share Posted February 5, 1999 Robin This is Michele. I too would like to have the answers to the questions that a asked you. Could you post back to the list ot email me direct. I am interested in others who may have a yeast problem as I hae not been diagnosed with anything at all yet. I have the burning at itching most of the time. m20d@... Michele Duke Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 1999 Report Share Posted February 5, 1999 I have a question for everyone? How does one go about finding a doc who knows about VV and all that you are talking about? My gyno knows zip. I'm in the LA area in the San Valley. Can anyone guild me to a good doc? Thank you! Lainey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 1999 Report Share Posted February 5, 1999 Sure . . . I'll try and post to the list sometime today. Robin Re: Surgery Robin This is Michele. I too would like to have the answers to the questions that a asked you. Could you post back to the list ot email me direct. I am interested in others who may have a yeast problem as I hae not been diagnosed with anything at all yet. I have the burning at itching most of the time. m20d@... Michele Duke Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 1999 Report Share Posted February 5, 1999 Hi all, Here's my assessment of how I got misdiagnosed by three doctors as having vulvar vestibulitis. Yes, the three doctors performed the q-tip test and did a visual exam. As a matter of fact in June 1998, three months before I saw Dr. and he diagnosed me with cyclic vulvovaginitis, the doctor that I had been seeing for three years (who diagnosed me with vv in September 1995)examined me on a day when I was having a flare up and told me " You have a textbook case of vulvar vestibulitis " , her words exactly. That's a really long sentence--you may want to break it up so it makes more sense . . . I'm taking a quick break at work and just don't have time to do the English grammar thing. I've always been suspicious of the q-tip test. To me it has always felt so unscientific. It's not a sophisticated diagnostic tool in my opinion. If you push a q-tip on any woman who is having pain in her vulva area there's going to be more pain. It's not like they are doing an analysis of a bodily fluid or anything like that. Dr. diagnosed my cyclic vulvovaginitis by performing a visual exam, performing a very thorough swabbing of the entire inside of my vagina and then examining it under a microscope. He found a non-albicans yeast called T. glabrata, prescribed Nizoral, and I was began improving overnight and have been pain free ever since. Feel free to ask any more questions. Robin Re: Surgery From: a1127@... Robin, This is a. I was just wondering why the doctors misdiagnosed you with vulvar vestibulitis? Did they do a q-tip test? If they did was there a lot of pain like women with vestibulitis have when they did the test on you? Also, how come they didn't diagnose you with cyclic vulvovaginitis due to yeast in the first place? I'm just asking because I'm still not sure if my vulvodynia is caused by chronic yeast or a yeast allergy or if yeast has anything to do with my burning pain which is constant. I also want to ask who how the doctors did diagnose you with the yeast problem? Did they do tests for yeast through your blood? How did they find out that yeast was the cause? I want to find the out the answer to that question too and I was just wondering what tests should my doctor do to find out whether yeast is the cause of my vulvodynia? I would really appreciate your feedback. a ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 1999 Report Share Posted February 5, 1999 Hi all, After reading Beckie's post the surgery thing is starting to make a little more sense to me. It sounds like the bottom line here is an accurate diagnosis of your vulvodynia. Like I've said before, this q-tip diagnosis thing is just not scientific enough to satisfy me! If the vestibular glands are the cause of pain in vestibulitis then removing them would solve the pain problem. Kind of like when people have gall bladder surgery. (Of course, I would love to see more focus put on what's causing the pain in the vestibular glands and gall bladders but I guess that is what research is for and from what I hear some research is being done). What concerns me is doctors misdiagnosing other forms of vulvodynia as vulvar vestibulitis. As you all know, I was diagnosed by three doctors as having vulvar vestibulitis when I had cyclic vulvovaginitis. Maybe that's the root cause of the problem. Doctors misdiagnosing vulvar vestibulitis and treating what they think is vulvar vestibulitis with surgery after exhausting conservative measures. Maybe that's what's behind the pain returning for some women. If you've misdiagnosed something and treat it incorrectly we all know it's not going to solve the problem. Hopefully I'm making sense here. What do you all think? Have a good weekend! Robin surgery From: RAL341@... Hi Everyone, I just got back from my doctor and I asked him alot of questions that I wanted to share with the list. First as most of you know, I had a vestibulectomy in December. I also wanted to share that my doctor is nationally known for his work with vulvar disorders and chronic pelvic pain. He is considered a true expert in the field and I trust completely what he says. I asked him about the nerves and if they regenerate and will start to cause pain. He said that the nerves do regenerate but they are not the cause of the pain. The pain in true vestibulitis comes from the vestibular glands themselves. Therefore, the pain will not come back. I also asked him about the removal of the bartholins glands and he said that they are not usually a problem with vestibulitis. He has only had 2 cases where they needed to be removed. He said he has some friends who are doctors in different states that always removed the bartholins glands. He asked them why they remove them and they did not have an answer for him. They have the same success rate as my doctor with over a 90% cure rate. He also said that removal of the bartholin glands is much more high risk of a surgery. There is a lot more blood loss and 10 to 15% of patients develop a hematoma. For those of you considering surgery, you may want to ask your doctor if they routinely remove them. I feel those with pure vestibulitis can really benifit from surgery. I am completely pain free and I would never discourage anyone from having this surgery. I hope this information helps someone. Please feel free to email me on or off the list. Beckie ral341@... ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 1999 Report Share Posted February 6, 1999 I was reading what Heidi and you were saying about surgery and nerve endings. I didn't have surgery, BUT I did have supposely HPV burnt off of some very delicate areas. Clueless as I was, I felt better for 4 wks then I was in horrible pain. When I spoke to my gyno she said that's about how long it takes for new nerve endings to grow back and cause the pain and so I'm wondering if that happens in the surgery too? Forgive me if I don't belong to this note. I could just relate to nerve endings causing pain later. Lainey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 1999 Report Share Posted February 6, 1999 Hi Lainey, If your insurance covers UCLA, go to the Pelvic Pain Center, which is run by Dr. Rabkin, a female, is the greatest. Joanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 1999 Report Share Posted February 6, 1999 Hi Robyn, I was diagnosed with vulvar vestibulitis, and my doctor recommended inteferon shots (9) all around the vestibule. He said he never had a patient complete all nine. Well, he also said the shots were recommended for HPV, which I didn't have. Well, I went three days a week, finished the nine shots, and got worse. I think the thing about the q-tip test is that if you have VV, the q-tip should feel like glass scraping against your skin. To me, it was like, yeah, maybe that feels a little worse, but I'm not sure. A new doctor and a new diagnosis blamed it on pelvic muscles in spasms (fibro), thinned vulvar skin (40's), prescription for anti-depressant, Estrace, calcium citrate, and no burning now for two weeks. I do have a little itching. I always heard when you get a wound and it's healing, it itches. Sometimes I wonder if our itching is our vulvar skin trying to heal. ??? Joanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 1999 Report Share Posted February 6, 1999 Hi Robyn, I was diagnosed with vulvar vestibulitis, and my doctor recommended inteferon shots (9) all around the vestibule. He said he never had a patient complete all nine. Well, he also said the shots were recommended for HPV, which I didn't have. Well, I went three days a week, finished the nine shots, and got worse. I think the thing about the q-tip test is that if you have VV, the q-tip should feel like glass scraping against your skin. To me, it was like, yeah, maybe that feels a little worse, but I'm not sure. A new doctor and a new diagnosis blamed it on pelvic muscles in spasms (fibro), thinned vulvar skin (40's), prescription for anti-depressant, Estrace, calcium citrate, and no burning now for two weeks. I do have a little itching. I always heard when you get a wound and it's healing, it itches. Sometimes I wonder if our itching is our vulvar skin trying to heal. ??? Joanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 1999 Report Share Posted February 6, 1999 Hi Robyn, I was diagnosed with vulvar vestibulitis, and my doctor recommended inteferon shots (9) all around the vestibule. He said he never had a patient complete all nine. Well, he also said the shots were recommended for HPV, which I didn't have. Well, I went three days a week, finished the nine shots, and got worse. I think the thing about the q-tip test is that if you have VV, the q-tip should feel like glass scraping against your skin. To me, it was like, yeah, maybe that feels a little worse, but I'm not sure. A new doctor and a new diagnosis blamed it on pelvic muscles in spasms (fibro), thinned vulvar skin (40's), prescription for anti-depressant, Estrace, calcium citrate, and no burning now for two weeks. I do have a little itching. I always heard when you get a wound and it's healing, it itches. Sometimes I wonder if our itching is our vulvar skin trying to heal. ??? Joanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 1999 Report Share Posted February 6, 1999 JoAnne, I think that you are right about the itching. Dr. Willems that started the use of estrace for VV says that in time that you can start having itching and not to treat it with anti fungals thinking that it's yeast. It usually means that you are healing and should continue the estrace. I am glad that everything is helping youl Darlene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 1999 Report Share Posted February 7, 1999 Thank you SO much. I'll call tom. and see if they take my insurance. Thanks!! Lainey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 1999 Report Share Posted March 4, 1999 Hi , I'd be more than happy to share my surgical experience with you. Busy right now. Will e-mail you privately later. I'm sure Beckie and would like to share their story too. Every bit of information helps. Talk to you later ---------- > From: mkbryan@... > To: vv listserv <VulvarDisordersonelist>; early onset support <EOVPSGonelist>; vvlist#2 > Subject: surgery > Date: Thursday, March 04, 1999 8:35 AM > > From: mkbryan@... > > If anybody has had a vestibulectomy (successful or not) or other surgery > (laser, CO2) can you please email me and let me know your symptoms, when > you had the surgery and the results. I am really considering this as an > option and would to get an honest picture as possible before I decide. > Thanks. > > > mailto:mkbryan@... > > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 1999 Report Share Posted March 5, 1999 Hi and everyone, Your comments just made me think about how I felt after my surgery, which unfortunately didn't work. While I was healing (stitches, etc) I still felt the same exact pain!!!! No change. The q-tip test was slightly better after the surgery, but my " constant pain " was precisely the same. That is just one more reasone why I think so much of my pain comes from the irritated urethral tissue. I am glad your surgery helped you!!!! Carolyn Re: surgery >From: Hengelsber@... > >I had a vestibulectomy about a year and a half ago. Before it I had pain when >I sat for lengths of time, I had shooting pains from my clitoris and from the >vestibule and the Q-Tit test was pretty painful. My doctor removed a very >small section and I felt almost instantly better (even with my stiches I could >already tell that it was better). Gradually I have felt better and better. >The Q-Tip test is virtually pain free now. Now I just have a stretching pain >with intercourse, which I'm trying to get rid of. Good luck with your >decision! > >P.S. My surgery was regular surgery done under local anesthesia in his >office. It wasn't laser surgery. I've heard some horror stories about laser >surgery. > > > >------------------------------------------------------------------------ >Have you visited our new web site? >http://www.onelist.com >Onelist: Helping to create Internet communities >------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 1999 Report Share Posted March 5, 1999 Hi and everyone, Your comments just made me think about how I felt after my surgery, which unfortunately didn't work. While I was healing (stitches, etc) I still felt the same exact pain!!!! No change. The q-tip test was slightly better after the surgery, but my " constant pain " was precisely the same. That is just one more reasone why I think so much of my pain comes from the irritated urethral tissue. I am glad your surgery helped you!!!! Carolyn Re: surgery >From: Hengelsber@... > >I had a vestibulectomy about a year and a half ago. Before it I had pain when >I sat for lengths of time, I had shooting pains from my clitoris and from the >vestibule and the Q-Tit test was pretty painful. My doctor removed a very >small section and I felt almost instantly better (even with my stiches I could >already tell that it was better). Gradually I have felt better and better. >The Q-Tip test is virtually pain free now. Now I just have a stretching pain >with intercourse, which I'm trying to get rid of. Good luck with your >decision! > >P.S. My surgery was regular surgery done under local anesthesia in his >office. It wasn't laser surgery. I've heard some horror stories about laser >surgery. > > > >------------------------------------------------------------------------ >Have you visited our new web site? >http://www.onelist.com >Onelist: Helping to create Internet communities >------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
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